9 Lessons I Learned From Having Two Beautiful Daughters (One With Down Syndrome)

Hayley Goleniowska writes for numerous special needs sites and gently changes perceptions of Down syndrome from within hearts over on her personal blog, DownsSideUp.com. Her youngest daughter Natty, who has Down syndrome, is also a clothing model and is opening the doors for ad inclusion.

Being something of an eternal student, I approached my first pregnancy in much the same way as a very exciting and practical college course. Books on ovulation, conception, pregnancy, nutrition, exercise, breathing, visualization, birth, and beyond lined my shelves. I read and devoured the facts within their pages as if memorizing them would help me gain the planned top grades in the final assessment.

And as much as all that stood me in good stead, two beautiful daughters, a series of heartbreaking miscarriages, and a surprise introduction to the world of different abilities have taught me that the most invaluable part was the support I managed to build up before our first baby arrived, a few choice words of wisdom from those who knew, and the flexibility to follow the unexpected path we were taken on.

So what would this wise old bird impart to new moms beginning their magical mystery trip to Motherhood?

1. There is no such thing as an absolute average, a complete norm, or the truly typical. How long it takes to conceive, the exact length of your pregnancy, how much your baby weighs, feeds, poops, and sleeps is no different. Neither your body, not your baby have the latest App telling them what is expected, so don't be frustrated or impatient with either.

2. Radiant and glowing you say? I felt unutterably lousy throughout my pregnancies. My face the shade of pea soup, so repulsed by food that my poor husband had to eat in the backyard. The exhaustion floored me. I wish I had been gentler on myself, felt less guilty, and just given in to rest, because making a new person is, after all, the most miraculous and incredible process.

3. In my arrogantly naive days, before I broke through the glass ceiling into the world of reality and diversity, I saw ante-natal testing as standard rather than the choice I now know it as. I recall saying that we were having the tests "just for peace of mind," that it "only mattered that the baby was healthy." But tests can only do that if you hear the result you think you wanted to hear.

With the prevailing assumption that Down syndrome and other chromosomal conditions are to be "screened out," you may face decisions and pressure to act in one way or another that you weren't prepared for, so think about what either result would mean to you before you put yourself through that stress. If your baby has some health complications, they are still your precious much-wanted baby with a loved life very much worth living.

4. I remember someone telling me birth wouldn't hurt. I think it might have been Pinocchio! Luckily, someone else told me to imagine a painful experience in my life to date, one that took all my concentration, but know that this time it would be natural and that each contraction would pass quickly, bringing me ever closer to my wonderful baby each time. That wise honesty got me through.

5. Make a birth plan, rewrite it, hone it. Add detail about how you want the third stage delivered and the type of bendy straw you will require to drink your juice through. You are in charge on your Birth Day.

BUT be prepared to rip it up and use it to mop your brow. Things happen, your feelings may change, the baby will lead you in this particular dance, and being able to bend like a reed in the wind is your greatest ability.

First, an undiagnosed full breech birth for us. "Oh my word, that's a bottom not a head, call an ambulance" came too late to dash for a C-Ssction, as Mia made her contrary entrance into the world. Out of the birthing pool we were hauled and I stood to deliver her, letting gravity lend a hand. Thank heavens the medical team were experienced and she was small. A calm voice whispered "you can do it," and we did.

Then meticulously-planned home birth for number 2, quiet, gentle, and beautiful. But on the bathroom floor a silent blue baby was born with holes in her tiny heart and an extra chromosome and a diagnosis we were not prepared for, the stigma attached to which she was unaware. This story ended in an ambulance dash for the neo-natal unit and life-saving care.

6. I have always been determined to breastfeed. What I didn't realize was that it takes a bit of practice to get it right, like riding a bike or making the perfect lemon soufflé. But with wonderful support from midwives and a lot of determination, we fed on through toe-curlingly painful blistered nipples, and secondly three months of expressing using industrial dairy-sized breast pumps, bagging, labeling, and refrigerating every life-giving drop and feeding it to vulnerable daughter through a nose tube. Like many babies with Down syndrome she learned to feed, with patience and practice.

7. Being a parent is the hardest, most challenging, most worrying, lonely, most rewarding, thankless, delightful, hilarious, tedious, exhausting, uplifting, role you have ever taken on and will change you forever in ways you never knew possible. There will be days when you doubt yourself.

You will feel overwhelmed at times and when people say you will be tired, know that it's not a stressful-busy-week-at-work-followed-by-an-all-night-party-and-a-Sunday-feeling-washed-out-on-the-sofa-watching-Rom-Coms-on-repeat kind of tired, but mind-numbing exhaustion that makes you forget your name, and that's on a good day. Fall back on the support of those you trust around you and take offers of help seriously. Parenthood is a marathon and not a sprint: Pace yourself, nurture yourself and know that no one has all the answers.

8. Your wonderful body will wear the medals of pregnancy and birth that cannot be removed. Learn to love the changes and thank it for the beautiful children it has created. You should be very proud.

9. Your baby hasn't read the manuals you are dipping into and they haven't listened to all the conflicting advice people will be giving you either. So enjoy those early months as they pass so quickly and accept your baby as the little individual they are. Compare them to no one else, no chart or book, and love them for exactly who they are, not your pregnant dream of what they were going to be.

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